Connective Issues Spring 2016

QUALITY OF LIFE

NUTRITION Q&A Nutritionist/therapist Hien Nguyen-Le answers common questions about nutrition and Marfan syndrome

feel like it? The short answer is using will power to a certain degree, but really understanding that this is what you need. It might not be what you feel like doing, but it's what you need. It’s difficult, but it might just be accepting that sometimes we need to do things to take care of ourselves that we don't want to do. I wish there were a better answer, but it's a hard thing and it's about accepting that and understanding the process. I wish there was a way to make somebody suddenly want to eat, but there isn't. Q: Are there things a person with Marfan syndrome or a related disorder should consider in weight restoration that may be different than the general population? A: As a whole, I would say that if a person with Marfan syn- drome has specific gastrointestinal issues, that wouldn't be different than anyone else with those same GI issues. If someone with Marfan syndrome had digestive issues, I don't know that I would look at that any differently than someone

Alix McLean Jennings worked closely with a nutritionist/ therapist, Hien Nguyen-Le, on the food and nutrition issues that plagued her daughter, Cassie, who has Marfan. Here are excerpts from Alix’s Q & A with Hien. Q: How can proper nutrition improve your quality of life? A: Nutrition affects every organ system in the human body, as well as our emotional and psychological state. In a nutshell, nutrition enhances our well-being by giving us more energy on every level—physical, emotional, and mental. In addition to having more energy and increasing our vitality, it also increases our resilience to tolerate stress in our lives. A: You would have more sustained energy. And you definitely would feel more balanced and grounded—the word I like to use is anchored—in your body and in yourself. If you think about individuals who don't have nutritional issues but, let's say, they missed a meal or they went too long without eating, we know how hunger can affect their mood. Now, imagine that on a longer term basis in someone who's chronically malnourished. Yes, absolutely. Q: Why am I not hungry when I am so thin? A: When a person's body is malnourished, it affects every system in the body, including the neurochemical system that regulates appetite, hunger, and fullness cues. Because that system gets broken, our body experiences skewed hunger and fullness cues. If hunger becomes suppressed, then a person who is chronically malnourished doesn't experience hunger. Their body is hungry, but they don't experience hunger cues as much. Hunger becomes a delayed reaction and fullness becomes premature. That’s called early satiety or premature fullness, which means that when a person who is malnourished starts to eat they'll complain about feeling full pretty quickly. They might feel full after a small amount of food is eaten. Q: How can I make myself eat if I'm not hungry? A: That is a tough one. The first thing is to find palatable foods. If you're not hungry, try to find the things that you like the most. The second thing is psychological acceptance and having a good understanding of the re-feeding process and knowing that this is temporary, that this is something that you need to do to get to the other side. How do you learn to do your homework when you don't Q: If you are better nourished, will you have more stamina, less fatigue, and feel more balanced?

else who also had digestive issues. I

TO READ THE FULL CONTENT OF ALIX’S Q & A WITH HIEN, PLEASE GO TO THE MARFAN BLOG ON OUR WEBSITE.

would still treat based on that person's indi- vidual medical profile.

Hien Nguyen-Le, EdM, RD, of Hillsborough, NJ, is a nutrition therapist who has specialized in the treatment of eating disorders and disordered eating for nearly 20 years.

NUTRITIONIST/THERAPIST HIEN NGUYEN-LE

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